I sometimes forget to stop and smell the roses. This is not just because I have epilepsy, it’s something that the vast majority of us adults do. There’s nothing wrong with my olfactory system, my misfiring brain got that part right, but I have a tendency to leave my achievements unacknowledged and to forget the times that I did get up, get out and do something wonderful. I don’t think it’s so hard for most children to do. Every time they step outside the door a child can feel exhilaration. At least they would if they’d been encouraged to go out and play rather than be praised for their ability to use a smartphone!
I’ve had a lot of wonderful moments in my life. I know I should choose to remember them rather than dwell on something that is past and over. I’ve talked a fair bit about choice, so maybe it’s time to start practising what I preach! I chose to not let epilepsy stop me from doing anything. In some ways I’ve channelled the frustration at having epilepsy into an energy that’s caused me to get up,dress up and show up, as the saying goes. A bit like sticking two fingers up at epilepsy and saying “I can and I will. So there!”
Friends of mine got married last weekend. It was a small, intimate, beautiful occasion with the bride wearing flowers and ribbons in her hair. Most of the guests had travelled from overseas to be a part of their day. That’s how much they’re loved. I was included in that and count it as a time that I got up, got out and was part of something wonderful.
So, I resigned my job, packed a 75litre rucksack including wedding outfits for 2 different weddings in 2 different hemispheres and only 1 week apart, I took a pile of anti-convulsants, a letter explaining why I was carrying so many drugs and I went travelling with my boyfriend. We swam in the topaz blue waters of the South Pacific, we skydived over Lake Taupo, we kissed in the middle of a tropical downpour, we trekked across a treacherous ridge through a tropical jungle (I whinged a lot of the way until we got to the beautiful waterfalls at the end), we skied in Christchurch, we stood in a forest of Kauri trees on one continent and drove through the trunk of a redwood tree on another. We watched the sun rise over Lake Matheson and the sun set over the beach and surf of a South Pacific paradise.We touched a glacier and watched the All Blacks do the haka on home turf. We did the foxtrot at one wedding in Cambridge, New Zealand and the following weekend we swing-danced at a wedding in a vineyard in Northern California. We gambled in Las Vegas and flew over the Grand Canyon in a Cessna during a lightening storm. We toured the Hoover Dam and we marvelled at the colour of the blue of Lake Mead. Just a few of the wonderful moments I’ve had in my life. Moments, experiences I would never have had if I hadn’t chosen to accept epilepsy as part of my life, not for it to be my life. I’ve had many more wonderful experiences…but I guess I’ll get to them.
Some people have suggested to me that I’m being irresponsible doing some of these activities. That I’m putting myself and others in unnecessary danger. The choice (there’s that word again) to do something, anything is mine. Where others are involved, such as with the skydiving, then I ensure they know about my condition and they can make an informed decision as to whether that’s something they want to take a chance on. I’ve taken responsibility for my life, my actions. I don’t not cross roads in case I have a fit on the white line, I don’t not leave the house in case I have a fit al fresco. Why should I place limits on my life, because of something that may not happen? Once again, I recognise that some sufferers have it considerably worse than me, and that what I choose to do would be an inappropriate action for them.
Around 12 years ago, I was asked to be a bridesmaid to a very close friend. A friend who’d visited me in hospital and helped put me back together on more than one occasion. I was there when she chose her wedding dress and I was thrilled with the emerald green she went on to choose for her bridesmaids colour. I had a seizure the day before her hen weekend was to start. If the weekend had been in Edinburgh I would have been able to go for a part of it, but it wasn’t it was hours away in another city. I explained to her that I couldn’t go. I felt that it would be too much for me and I didn’t want her worrying about me the whole time she was meant to be partying as I knew she would. She seemed fine, disappointed but fine. A couple of weeks later, the week before the wedding she came to see me and said she didn’t want me to be her bridesmaid anymore. She didn’t want me to have a fit at her wedding. I accepted her decision with as much grace as I could muster, hugged her and said I understood. I didn’t. Apparently it was still ok for me to go to the wedding as a guest but just not as part of the bridal party. Obviously a guest being taken ill at her wedding was more acceptable. That makes me sound bitter and I’ve tried hard not to be, but I didn’t understand why my closest friend, who’d stood by me and my condition for many years could cut me out so brutally. That’s how I saw it. I guess she saw it as me letting her down at her pre-wedding drunken weekend. I didn’t go to her wedding. We didn’t see each other after that for a few years. I tried to get back into contact with her, but it was clear our friendship was over. I wonder if I was wrong not to go to her hen weekend. Probably? Possibly? I really don’t know, I felt I was doing the right thing because I was scared my sheer exhaustion and hence lack of enthusiasm to go clubbing and drink to the wee small hours would ruin her weekend. I have lost friends through having epilepsy but none have left such a hole as she did.
I’m glad to say I’ve been accepted at more weddings than I’ve been rejected from.
One day when she’s old enough to understand, I’d like to sit down with my friend’s little girl, S, and talk with her about all the ways she can live a wonderful life despite her “shakies”. Encourage her to live out her dreams and be inspired by the wonders of life around her. I’d actually like to sit down with my non-epileptic god-children, my niece and a whole host of other people, young and older alike, and have the same conversation! It’s ok to feel the fear that comes with having epilepsy. It’s not ok to feel controlled by that fear. And that’s not just true for epilepsy sufferers.
Turning my life into a mere existence because I have epilepsy is not a viable option. I have too long left to live just to exist. Vitality, vigour, energy, joy, wonder. Life.